Tag Archives: disability

What is society for?

Humans, nearly universally, live in societies. We get together and live cooperatively and interdependently. Humans are profoundly social animals; it’s our primary survival strategy. There are a number of benefits this confers such as skill specialization, resource sharing, and cooperative breeding, but I really want to focus on the disabled aspect of this. What is society for in terms of disabled people?

I think that people have two wildly differing ideas regarding what society is for, and that is where a lot of conflict comes in around how to care for disabled people (or, and this is terrible even to say, whether to care for disabled people at all). Personally, I call these ideas the goose model and the wolf model.

So ages and ages ago, I lived on a sheep farm for around a year. That sheep farm happened to have a flock of geese that lived there too. Those geese had pretty easy lives. Food and water was plentiful, shelter was close at hand, and the dogs made sure that they didn’t really have to contend with predators. Nonetheless, geese will always be geese. Geese are also social animals, preferring to hang out together in a flock (with the exception of breeding season, but anyway). However, they do not in any way take care of each other while they are in this flock. I got to witness one goose get sick (not terribly sick. Like a goose cold or something) and the rest of the flock turned out that goose absolutely viciously. They drove it out, wouldn’t let it get close, and closed ranks against it. That poor goose tried incredibly hard to be as close to the flock as they would let it get, and otherwise just tried to spend it’s time hiding since it was alone and didn’t have the safety of its flock.

To the geese, the group is about protection from predators and a hostile world. Even if the world they live in isn’t actually hostile, that’s still what the group is for. A weak member of the group drags everyone down, and thus is undesirable. This is what I call the “goose model.” This idea of society is fear-based, constantly worried about attack from outside threats, and considers it best to get rid of anything that might be seen as “weakness.” 

(Disclaimer: I don’t know if all geese act like that or just the breed that I was around, which I believe was a particularly vicious kind of goose. Regardless, it’s still where I got my metaphor for this part of my model)

Then there’s the wolf model. Wolves also live in groups, but their treatment of the sick or injured or weak is wildly different from what I saw in those geese. Wolves actually care for their weaker pack members. The weak, the injured, the sick, the elderly, the disabled – the rest of the pack takes care of them. I’ve seen this behavior in cats as well. Cats are not as aggressively social as wolves or humans are, but they still can form bonds with each other and I’m sure we’ve all seen stories about a cat taking care of an injured friend or refusing to leave an injured cat’s side. 

In this model, a society is for taking care of each other. The strength of the group comes from the assurance that the members will always take care of each other. There is no need to judge anyone’s individual contribution – we’re a family, and family takes care of family. 

It probably goes without saying that I am in the wolf model camp. Humans are cooperative and interdependent, and I strongly believe that our strength comes from taking care of each other. It’s about the entire group lifting each other up, and everyone being better off because of it. It’s about recognizing that everyone deserves to live and thrive regardless of what they may struggle with.

As far as I can tell, human societies have been all over the board in regards to how they treated the sick or disabled. Since I’m not actually trying to write a term paper here, I chose to not dive into that mire. I did, however, find some interesting articles about prehistoric societies. Apparently there is a growing body of evidence that prehistoric societies also took care of their sick, injured, etc. Here is an article going over a few cases of archaeological finds showing disabled individuals thousands of years ago, living far longer than they would have been able to on their own. They absolutely had to have been taken care of – meaning the people around them did exactly that. It seems that at least some ancient humans viewed the role of society as being for taking care of each other. 

Personally, I think that’s pretty cool.

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Income does not equal Worth

dollar sign image, creative commons, from Rareclass

I want to talk a little bit about a thing that I really, truly struggle with. I live in the US, which is an extremely capitalistic society. Here in the US, your value is strongly equated to your income, in some sectors to the point that your income determines your morality (rich people are good regardless of what they do; poor people are bad regardless of what they do). Disability is often seen as a moral failing, and being too disabled to work is seen as either shameful or lazy.

I have been very open on my blog about the fact that I do not have a job or do work for an income, as well as the fact that any time I try to do so I end up profoundly Not Ok. What I am less open about is the fact that I feel incredibly deep shame around that fact. Nor has everyone around me been understanding of my difficulties in work. I’ve had second wave feminists tell me (back when I was presenting as a woman) that I should get a job Because Feminism with clearly no understanding of why I wasn’t working. I once had a therapist spend months trying to push me to get a job until she saw me being Not Ok and changed her mind.

Now, intellectually I don’t at all think that income means worth. I believe that everyone has worth, just by existing. I believe that everyone deserves food to eat, access to healthcare, and a reliable place to sleep and bathe regardless of who they are or how much money they have access to. I believe the role of society is to support everyone. I believe that there are many ways to contribute to society that don’t necessarily involve generating an income. In fact, given that “generating an income” relies on producing something that other people are willing to pay for, I’d say that there are MANY ways to help and contribute to society that don’t involve getting paid.

Yet despite these beliefs of mine, I have strongly internalized the idea that worth comes from generating income, which means that since I don’t generate income I must not have worth. I am constantly bombarded by the message that I need to work for money to have value as a human being – both from society at large and from people I am or have been close to (not everyone I’ve been close to, but definitely some of them). I frequently wonder what kind of income work I could do that wouldn’t leave me Not Ok. Something like working all by myself in some dusty basement doing archival work or something (ok, that one is less a practical idea and more a fantasy. ANYWAY). 

I wish I had strong words of wisdom I could put out there for other people who feel like I do, but I don’t. All I have is 1) the firm belief that we all deserve to live, and thus deserve the things needed to live, regardless of our ability to produce an income, and 2) an internalized belief that because I do not generate an income I have less value than the people around me. It’s rough.

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Filed under issue, opinion

Can we please have a conversation on this?

Ok, this is getting written just minutes before I am posting it, so this will probably be pretty rough. Let’s see how this goes.

I follow a woman named Caitlyn Doughty on youtube and on her blog. She is a mortician who talks about death, and grief, and burial practices, etc. She wants people to become more connected to death and grief and such, and is generally not in favor of how our current society generally tries to avoid such things. This is a really rough explanation, but I hope I’m getting the idea across. I really like her youtube series Ask A Mortician and generally support her ideals.

Now, there’s one thing in particular I want to focus on here. On her blog, she is talking about an “End of Life Option Act” currently in debate in California. She is strongly in favor of it, believing that people who are terminally ill should have the option to request medication to peacefully end their lives. Honestly, I can see her point. I would even go so far as to say I support the idea.

Only there’s another side to this. A disability side. A side where doctors (and others) will take it upon themselves to decide whether or not a severely disabled person’s life is worth living. This is a very dangerous and Not OK thing (and there are links out there about it; I’m sorry I don’t have any on hand right now). So in disability communities, often people are absolutely against Death With Dignity legislation, because of how it could easily be abused.

What I think needs to happen is for these two groups to have a conversation. Those who are in favor of things like the End of Life Option Act need to sit down and listen to the concerns of disabled individuals and find ways to address them. The concerns of the disability community are serious and entirely valid, and deserve to be heard.

Which is why, way back in February, I decided to give it a try. I went ahead and emailed Caitlyn via the email address given for Ask A Mortician on her website. This is what I emailed:

Hello. I am a big fan of your work, your book, your youtube channel, and your message of death positivity in general.
You recently posted a link to your facebook page talking about a landmark decision in Canada to allow two women to “die with dignity.” I support such legislation and am a big believer in people being able to take charge of their own deaths.
However, I also run in some circles that are strongly against such legislation. As such, I have a serious question for you. I know you cannot answer individual mail anymore, but I hope it is at least something you are keeping in mind as you do your work.
I am autistic, and am at least somewhat aware of disability issues. One of those issues is the extremely serious problem of doctors believing that disabled lives are not worth living, and doing things like pushing disabled people to not undergo life-saving treatment, or deliberately giving needed treatment so slowly that it does not do any good. One of the responses to this problem is to be against “death with dignity” legislation, under the idea that there is absolutely no way to enact this without leaving it open for abuse by doctors and caregivers of the severely disabled.
I like to believe that there is a way to cover both of these issues. So what I want to know is – as a proponent of death with dignity and such, how are you taking into account the other side of the coin, with the current and horrific problem of people in positions of power already concluding that disabled lives are not worth living, despite the fact that many of those disabled people feel very much so that their lives ARE worth living? What do you think is the best way to prevent abuse of “death with dignity” laws or rulings in the future?
Thank you
Andraya
Now, I knew getting a reply was unlikely. I’m sure she’s very busy with her projects and what’s going on in her life. However, I still found myself hoping that she would see this as a significant enough issue to address. That there would be some acknowledgement from her on how important it is to never decide for someone else whether or not their life is worth living. But, I suppose unsurprisingly, there has been nothing at all. And now she’s seeking support for this End of Life Option Act in California, and all I feel is sadness that the death with dignity people won’t bother to have a conversation with us.
As it is, I don’t think I can fully support death with dignity anymore. At least not until we can have this conversation that we really need to have, addressing the very real concerns regarding possible abuse by doctors. Being heard is important, and it hurts when it seems the concerns of disability activists are seen as irrelevant.
UPDATE: Not long after putting this post up, Order of the Good Death contacted me by email! It was mostly informational, adding some details that weren’t in the blog post about safeguards and such that exist to hopefully prevent abuse. Apparently that is also why they want to send it through the legislature rather than have it go by a ballot – those safeguards would probably be dropped if it went to a ballot measure. So these are the points that Order of the Good Death made regarding safeguards:
  • It allows only qualified, terminally ill and mentally competent adults to request and obtain a prescription from their physician for medication that the patient can self-administer to bring about a peaceful and humane death.  Two physicians must confirm the prognosis is terminal.
  • It requires two witnesses to attest that the request is voluntary.
  • It protects physicians from civil or criminal liability, and from professional disciplinary action, if they fulfill an eligible  individual’s request. Participation by doctors is fully voluntary.
  • It provides safeguards against any coercion of patients: It establishes felony penalties for coercing or forging a request; and it honors a patient’s right to rescind the request.

That the medication is to be self-administered is, I think, the point that I find the most important. I do not believe even these measures completely prevent possible abuse, but it does drastically reduce it.

Plus, I am both surprised and pleased that I was contacted at all. That’s pretty cool.

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Filed under death, issue

I am so sick of this

Image is of a woman prying herself out of a wheelchair in order to reach top-shelf alcohol. Text reads: “Alcohol / Makes miracles happen”

I am really struggling to find my words on this one, but I am going to try. This meme. This HORRIBLE meme. It’s hardly new, but it just keeps popping back up, again and again. I am inclined to think that there are *many* layers of awful in this, but let’s start with the obvious one. That people assume she’s faking.

*sigh*

The fact of the matter is, there are people out there who still have some use of their legs, but still need wheelchairs. It’s a thing. Yet so many people out there are either unaware of this, or just refuse to believe it.

This is an example of people policing disabled people. We have to be disabled “enough” in order to “count.” Apparently the only options are able-bodied, or para- or quadriplegic. This erases the existence of people who have partial paralysis, or MS, or degenerative diseases, or any number of other things that will severely limit a person’s mobility but still leave limited use of limbs. There are many people out there who outright need wheelchairs, but can stand for short periods of time.

Yet when looking at this picture, it seems that people just see a “faker” because, of course, that is the only option for a person standing from a wheelchair. (tone note: that was intended as sarcasm)

Only when I look at this picture, I do not see a person who is standing easily. I see a person who is standing awkwardly. Who is holding themself up with the assistance of a shelf. They do not look like they are faking it to me, so why do we have to go there?

And then, of course, there is the alcohol part. I strongly suspect that people see this, and even if they recognize that the person can probably only stand with difficulty and for short periods of time, there is judgement that the person is standing for alcohol. As though alcohol is a luxury that only able-bodied people get to have. That disabled people should stick with what we can reach. Or possible, that disabled people are supposed to be helpless. How dare someone work to get what they want, and how dare that work go towards alcohol? (more sarcasm)

And really, there are SO MANY ways that able-bodied people police disability. The comments people make when they see someone walking from their car in a disabled spot is one of them. I mean, I’m sure they think they are standing up for disability, by calling them out when able-bodied people use those spots. And yeah, there are assholes who use those spots inappropriately. However, that random person out there who yells at the person who parked there *cannot tell* if the person is disabled or not.

I’m serious. No one can. We can’t tell if the person has some form of condition that allows them to walk, but only for very short distances. We can’t tell if they have an artificial limb under their pants. We can’t tell if they have rheumatoid arthritis or fibromyalgia or any other painful condition that makes walking agony. Yet when people yell at a person who perhaps looks fine on the surface, they are assuming they can tell. They are saying that only the visibly disabled get to have accommodations, and those who have invisible disabilities can stuff it.

And they are saying that the only ok way to be disabled is to be entirely helpless.

We need to stop it.

Right the fuck now.

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Filed under rant, that's not helping

I am not a feminist

Mad intersection

It’s true. I do not call myself a feminist, I do not want anyone else to call me a feminist, and I can no longer justify considering myself a feminist.

What I want to do here is explain why.

Though first, i want to explain why not. I mean, usually when I see people claim they are not feminists (usually on the internet) they are setting up blatant, horrible straw man arguments and making utterly absurd claims about feminism in order to tear it down. Usually the people in question are really quite misogynistic or are women who are internalized a lot of sexism, and it is not at all uncommon for those folks to want to make things go back to how they were in the past when women were always expected to be subservient to men.

I am not one of those people. Not at all. When I encounter those people I generally immediately want to leap to the defense of feminism, as I believe those critiques are entirely unreasonable.

No, the reason I am finally rejecting feminism is because feminism has failed, and is continuing to fail, in regards to intersectionality. It is a very serious problem within feminism, and it is one that I can personally no longer deal with.

I’m going to start with an example that I think people might have an easier time swallowing than my own issue, just because of the way the world is right now. Ages ago, Michelle Obama, the FLOTUS, said “at the end of the day, my most important title is still mom-in-chief”

And boy was there a kerfuffle over that one! Many feminists (white, straight, able-bodied feminists) thought that she was totally betraying feminism and being a bad example of a powerful woman and whatnot. Now, there is a very good write-up of all the problems of that over here that says it all much better than I ever could. I highly suggest you read it yourself, but if you don’t want to here’s a brief excerpt:

Racism, slavery, white supremacy, economic inequality and deprivation forced black women to cater to the needs and demands of Miss Ann and her family. For centuries, we black women ran ourselves weary and exhausted making sure white men, white women and white children are fed, bathed, clothes and content before we could even have a moment to feed, clothe, bathe and care for ourselves and our own families.

To add to this, I just recently read the book Incidents in the Life of a Slave Girl, which is a rare, first-hand account of slavery written by a woman. Of note – even after she escapes, even after she got her children out, even when she was living in New York – ostensibly a free state, even when she found friends who would help her, she still had to get work caring for a white baby while being unable to even live with her own children.

The point here is that the history and oppression of black women is fundamentally different from the history and oppression of white women. Feminism that only recognizes the oppression of white women and expects ALL women to conform to that perspective is totally failing to take into account the different needs of black women. For white women, choosing to leave the home and work was the defiant choice, proving their independence. For black women, who were often forced to leave their children to take care of white demands, it’s the opposite.

Thing is, race is far from the only area where feminism has been blind to intersections. Sexuality is another obvious one. However, the ones that strongly impact me personally and have made it impossible for me to continue to call myself a feminist are the intersections of being female while also being autistic, mentally ill, and disabled. A feminism that ignores the impact of these things is a feminism that has no idea of my needs or the kinds of choices I need to make. This is a feminism that does not even acknowledge my existence.

And while feminism is starting, barely, to notice that there is work to do in regards to the intersections of womanhood, race, and sexuality, they still do not notice or acknowledge the myriad other intersections that exist and matter and make an impact on individuals.

As it is I certainly support much of feminism. I believe in equality for all sexes and genders, I believe that gender is still a major issue in the US, and I believe we still have a lot of work to do. But I am not a feminist, because I cannot be part of a group that is blind to who I am, the choices I make, and how my empowerment will look different from their empowerment.

Instead, I have taken to calling myself an intersectionalist.

I’m sure it will be a thing eventually.

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My Biases

Recent events have gotten me thinking about some of my biases. I do have them. Some of them are really quite strong. I am not here to apologize for them – quite the opposite, I like the biases I am about to talk about. My writing tends to be heavily influenced by them. However, it is clear that there are people out there who think these types of predispositions are absolutely horrible, so I figured I would just make what I believe utterly clear. This is my perspective.

1. I am heavily (though not completely) into the social model of disability. I do not say this to simply disregard the medical model, but to say that the medical model is, by itself, woefully incomplete. The social model is absolutely vital.

Basically, this means that I think that the problem is not so much the physical or mental differences (which is not to say we don’t have challenges. we do. See my contradictions post), but the way society treats those of us who have physical or mental differences.

I do not say that it is we who are broken and have to be fixed or cured. I say the world needs to learn to accept us, embrace us, and accommodate our needs. This is a very huge deal, especially as it seems that some people who strongly prefer the medical model of disability can be quite vitriolic about it.

Further reading:
http://en.wikipedia.org/wiki/Social_model_of_disability
http://www.scope.org.uk/about-us/our-brand/social-model-of-disability

2. Disabled adults need to lead the conversation about disability – not the parents of disabled children. This… this is a contentious point. Just to be clear, I am not saying that there is no room for parents at the table. Quite the contrary, parent’s voices are important too. However, non-disabled parents need to take a few steps back to make sure the voices of disabled adults are heard first, and need to be willing to listen to and take seriously the messages coming from disabled adults.

If parents of disabled children decide that the adults within their particular disability niche should not be listened to, I will be incensed. Would they want their own children to be ignored that way, when their children become adults? Somehow I doubt it.

If said parents disregard the social model of disability and are firmly within the medical model of disability and refuse anything else, my reaction of displeasure will only increase.

3. This one is more recent and less entrenched than the other two, but more and more I’d like to see the various diverse disability movements come together. I would like to see autistic adults do more talking to adults with other disabilities. I would like us to talk about how our issues overlap, and how we all might be able to help each other. Because there IS overlap, and surely we could come together to combat the problems. So often our communities seem so insular. Maybe there’s a way to change that.

This post needs a conclusion or wrap up. To be honest, I can’t particularly think of one. I suspect I have more biases, but these are the big ones. These are my beliefs, and I care about them, and knowing what they are probably helps shed light on where I’m coming from.

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Inspiration Porn

(a note on the tone of this post: it is intended to be entirely sarcastic, showing both the nature and some of the problems of inspiration porn in a humorous fashion)

 

Are you an able-bodied, neurotypical person? Do you like to watch videos of disabled people doing a thing in order to feel “inspired”? Have you ever wished you could make your own video so other people could feel inspired? Well look no further! Here is a step-by-step guide to making your own inspiration porn.

1. First, you will need to find a disabled person. Perhaps you have an autistic family member, or you know someone at school who has down’s syndrome, or you have a coworker who is paraplegic. Really, pretty much any disability will do.

2. Take your camera or camcorder, and record the disabled person having a personal moment of triumph. Now, inspiration porn is best if you make it out of a genuine triumphant moment, but it does not actually need to be. It can even be as simple as your paraplegic coworker moving from their wheelchair to a desk chair, or an autistic child petting a cat and smiling.

3. Now you are ready to take that moment of triumph (or everyday, ordinary activity), and create inspiration porn out of it. Start by adding some sappy inspirational music.

4. Add words.

This step is the most important. So much of inspiration porn is how you talk about is. A dramatic voiceover is, by far, the best. However, a paragraph description or even a carefully worded title will work as well.

First, establish that being disabled makes a person “broken” in some way. You must provoke pity in your viewers and convince them that the disabled person’s life was barely worth living until this moment. Bonus points if you use the word “tragic” to describe the person, or even better, to describe their entire existence.

Then, have a rising crescendo of their personal triumph (or everyday, ordinary activity). It must be conveyed as nearly miraculous and definitely life-changing. The viewer must feel amazed that it ever happened. Go ahead and imply, or even outright state, that it would only be reasonable for the viewers to assume that the disabled person is incapable of doing the things that non-disabled people do.

And there you go! Put it up on youtube and sit back and relax. Now you, too, have removed the humanity of a disabled person, taking their personal moment of triumph (or everyday, ordinary activity) and turning it into packaged up, condescending claptrap that exists only so that non-disabled people can have feels about it. As we all know, a disabled person’s triumphs are never really about them – the triumphs are actually about how the rest of us can feel about them.

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Filed under that's not helping

I feel kind of defensive about this

When I see people talking about positive traits in other people, “ambition” tends to rate really highly. We’re all supposed to have ambition, and lack of ambition is seen as a personality flaw.

Of course, “ambition” always seems to be short for “career ambition.” It seems we’re all supposed to have a goal to advance in our career in some way, and if we don’t there’s something wrong with you. Something *bad* about you.

I don’t know, maybe I’m overreacting. Maybe it’s just me being twitchy and defensive, because this is an area in which I do not, at all, fit into how society tells us we are supposed to be. It’s an area that gets me judgement when people learn about it. If I’m lucky, all I’ll get is a “look.” If I’m not so lucky, I get grilled about what I’m doing instead and why I don’t have a job. I rarely want to tell these people that I’m on the autism spectrum or my history with mental illness that has kept me out of work, so it can get really uncomfortable and awkward. I mean, this is why I do not want people to ask me about work as an ice breaker.

So it’s true that I don’t have career ambition. I mean, I don’t have any career. Nor is getting a job anywhere on my short-term goals list (it’s a possibility down the line, but right now? unless something magically falls into my lap, it’s not going to happen). I don’t think this makes me bad. Nor do I think it’s cool to make “ambition” only be about careers.

Sometimes I see people who have greater struggles than I do redefine independence. Instead of independence being about not needing help, independence should be about freedom of choice. Sometimes people need help – that doesn’t mean we should be denying them the ability to have determination over their own lives.

I suppose it may be a lesser issue, but I want to do something similar with ambition. I don’t lack goals, my goals just have nothing to do with my nonexistent career. I am actively working to improve myself in all sorts of ways, and I always am. I have goals about getting more mobile, about finding more ways to contribute to my household, about volunteering at the barn where I ride, about the various crafting things I always have going on, about my writing… Honestly, you don’t get to tell me that none of that counts as ambition. Sure, it doesn’t look “normal.” Sure, things that are “just hobbies” for other people are serious business for me. Sure, I’m struggling with things most people have down by the time they’re my age. That’s kinda how it goes with me.

But it doesn’t mean I’m less than you. It doesn’t mean I’m a lazy layabout. It doesn’t mean I’m not ambitious. It just means I’m not like you, and that’s ok.

 

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More on intersections

Ages ago someone found my blog because they ran a search for “do I benefit from white privilege if I’m autistic.” I wound up noting it down in my blog topics list to get to eventually. Apparently “eventually” has arrived.

Talking about privilege is tough. I’m not good at it  – I hope to be at least somewhat better eventually, but I’m not there yet. But then, I won’t get better at talking about privilege until I actually start talking about privilege, so there you go.

To get straight to be point, before I go off on a ramble – the answer to this question is an unequivocal yes. Yes, white privilege applies when one is autistic and white. Male privilege applies when one is autistic and male. That special combination of straight, white, male privilege exists for straight, white, male autistics. Autistic people of color face an icky combination of discrimination and prejudice that white autistics do not.

Increasingly I think that privilege and oppression really needs to be talked about as an intersectional thing – when the intersections are ignored, the conversation becomes pretty much worthless. Autism sits right at the intersection of disability and mental illness. There are many ways in which this is not a nice place to be. I mean, disability is barely, if at all, seen as a social justice issue. People don’t even bat an eye when disabled people have to go down alleys, use service elevators or that sort of thing to use the the buildings all the rest of us use without even thinking about it. If you bring it up, most people will not think about it in terms of discrimination. Sure, “your entrance is in the rear” is bad for most people, but disabled people? Apparently that’s ok. Or you’ll get a place full of self-professed “egalitarians” bending over backwards to defend paying disabled people less than minimum wage.

Both disability and mental illness are treated in dehumanizing ways. I once wrote a post about wanting to see autistic representation in the media. It was about how cool it would be to see a cool, confident, likable character who happened to be autistic, and about how unlikely that is to happen. But really, in a way, that was setting the bar REALLY low. I mean, the character would almost certainly still be white, male, straight, able-bodied, and have a career. A strong, confident, likable character who’s in a wheelchair, or is too disabled to work, or could work in theory but can’t find a job because they can’t get through the interview process? No, that’s not happening. That’s so far from happening that even thinking about asking for it seems utterly and completely absurd.

Anyway. This is getting a little rambly. Intersections. I am on the autism spectrum. I am female. I have been too disabled to work for many years now (though with meds that might change). I feel incredibly fortunate and grateful and I did not wind up living on the streets – something that was probably more of a risk for me than I care to think about, had aspects of my life gone differently. I don’t drive. There are no people like me on TV, and I face a lot of judgement for being the way I am (that is, when I reveal these things to people who are relative strangers. which is rare, because I don’t like the way people look at me when they learn some of these things).

On the other hand, I am white. I am able-bodied. I can usually hide my differences from random strangers on the street, and just look “quirky” instead. There is privilege in that. No one will judge me because of the color of my skin, no one will make assumptions about me based on the texture of my hair, service people will notice my existence and interact with me without uncomfortable glances at mobility aids. So YES, I am benefiting from white privilege, as well as able-bodied privilege, speaking privilege, sight privilege, cisgender privilege and various other abilities I have that other people don’t.

So, random person on the internet, yes, you benefit from white privilege if you are white, regardless of what other privileges you do or do not enjoy. Privileges or lack thereof definitely intersect and impact one another, but they do not cancel each other out.

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Ice Breakers: An Open Letter

creative commons image by williamarthur on flickr

Dear World at Large,

We’ve been slowly getting on a little better over the past few years. I’m learning to navigate your tricky social world and you’ve been learning that I can be pretty cool sometimes.

Sometimes, though, we just don’t seem to get along. I do really try to live by your rules and your standards of how people are supposed to be, but sometimes I really need you to take a few steps towards me. This is one of those areas.

Stop asking people about their job as an ice breaker!

Seriously. I am not very good at making conversation with strangers in the first place, but this ice breaker really does not help. Not everyone works, not everyone has a job that they are happy with, and not everyone has a job that they can talk about. I know you want to think that it’s good enough since it works for most people, but it can be seriously alienating for those of use for whom it does not work. It is also an area with a lot of social baggage stuck onto it, and it can be expletive difficult to avoid feeling shame if you happen to be one of those people who does not have a job.

Sometimes people ask what sounds like a more general, “what do you do?” type of question. I would like this if it were actually general. Then people could answer with their job, or with their hobbies, or with their advocacy, or whatever else they could talk about in terms of how they spend their time. Sounds great, right? Except that I have learned that when people do this, they are not actually meaning it as generally as it sounds. They are still asking about a job.

Story time! Once, I was chatting with a stranger and she asked me the “what do you do?” ice breaker question. I chose to answer in terms of one of my hobbies, so I said that I crochet. The rest of the conversation went about as follows:

Her: Oh, you crochet for money?

Me: No, it’s a hobby.

Her: But what do you do for money?

Me: Nothing.

Her: But how do you get by? What do you do?

Me: I’m a hobo.

Eventually a friend of mine stepped in and said that I am “between jobs” and the interrogation ended. However, this should never have happened in the first place. If I choose to answer what I “do” with a hobby, please just go with it. Why is it so important to pursue the job question, even when I have clearly chosen to not answer? What is so important about knowing how I do or do not make money?

A similar thing happened another time when I was chatting with a stranger. The usual “what do you do?” question came up. This time I was blunt and simply said that I do not have a job. I was then subjected to yet another interrogation regarding why I don’t work, and am I looking, and how hard am I looking, and how long has this been going on and honestly, why is that necessary?

This is one of the reasons why I rather dread talking to strangers. The pervasiveness of this question is rather frustrating for me. I already find it difficult to talk to people I don’t know, and I already find it difficult to cope with my jobless status. Combining the two into one horrible interaction just comes across as unfriendly.

I don’t think I’m asking something terribly difficult. It can still be a job question for all those people who want it to be a job question. Just please let it be a hobby/other things I do with my time question for the people who need it to be. If I choose not to answer in terms of a job, please just go with it. Be ok with it. It can still be an ice breaker if two strangers find themselves talking to each other for whatever reason. In fact, it will be a better ice breaker, because it will no longer be excluding people who are disabled and don’t want to talk about their medical status, or otherwise don’t have a job and don’t want to be interrogated about it. It’s not friendly, it’s not nice, please stop.

Thanks

me

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